They say it gets easier. They’re wrong. It gets harder. The seizures
become more frequent. First every six weeks, then every two weeks, every
ten days, every week, twice a week, twice in a day. Anti-seizure drugs continue to go
up and up and up. I remember hating to open the tiny blue-white and orange-white
capsules to sprinkle the mysterious white powder into his yogurt. If he
took a breath he'd inhale the fine granules making him cough and
grimace. He is so dutiful. He doesn’t want to take it. I tell him it is
his medicine and it will make him feel better. Maybe it actually makes
him feel worse. He can't tell me. I say, “take one bite for
Mama,” and he does. All the while it feels like some sort of
evil concoction. Who knows what it does to his brain? The chemists don’t
even know exactly how or why they work—
if they work. Then there are
the tablets: the small square ones with rounded corners; the ones with
GX 52 embossed on one side; the white oval ones as easy to break as pixie sticks. The blue ones with the white centers hard as brick, which I cut by pressing centered on the pill cutter's blade. He used to refuse his yogurt and I
can guess why. He knew. These drugs, they make him feel sick inside, perhaps even sad at times, and he cannot be released. It's like we are poisoning our own little kid. He's only nine, was two when we hid the first ones in his food. Thousands of pills dissolving into his gut, into his brain. And yet, the seizures persist.
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July 2006 |
Ditto, ditto, for ten more years. It doesn't ever get better. Ever. Unless they're better. And often, they're not.
ReplyDeleteBut oh, that photo. He's so damn beautiful.